Marrow Matters

This weekend, a friend of mine sent me a link to the Be The Match registry, which allows people to register to donate bone marrow. Because of the very small chance of finding a match, the registry is in need of more donors, particularly for certain ethnic groups. 

The process is simple. You register to receive a kit. When it arrives in the mail, you take a cheek swab and send them the sample. If a patient matches your sample, you receive a call and have the option of being a donor.

But when I tried to register, I saw this.

(In case you can’t read it, it says: “7. (Men only) In the past 5 years have you had sex, even once with another male?”)

I tested it out. Sure enough, if you select ‘yes’, the site will not let you take the test. It doesn’t stop you from donating marrow – it stops you from even taking the test to find out if you are a match.

This seems silly to me for a few reasons. And if anybody can explain this to me, I’d honestly appreciate it, as it makes no sense to me.

First, while I understand the fear of HIV, this is a bit misguided. In the early 1980s, the cause of AIDS was uncertain, so this screening question would have been very useful. Nowadays, gay men are not necessarily the demographic most prone to HIV, yet MSM (men who have sex with men) are one of the few demographics explicitly barred from registering. The question makes no attempt to distinguish between high-risk, unprotected sex and low risk, protected sex. Think about the ridiculousness of this for a moment – a hypothetical straight woman who never uses condoms with her many sexual partners is eligible, while a gay man in a monogamous relationship who always uses protection is not. Ceteris paribus, who would you rather receive marrow/blood from?

Second, a test is not equivalent to a donation! This is very different from a blood donation, which is a one-time, anonymous commitment. A blood donor donates in advance of an unidentified patient’s need. A marrow donor only donates once the recipient patient has been identified. Once a match is found, the donor has to submit to a battery of medical tests. A marrow donor must also follow up several times, which makes it easy to test for HIV or other blood-transmitted diseases. While the seroconversion process varies in length, HIV is detectable in most people within 90 days of exposure. Yes, there are false negatives, but this is always a known risk for blood donations and is not exclusive to MSM.

Furthermore, once registered, a person remains in the registry until the age of 60. A five-year ban makes little sense in this context, especially given that a person’s sexual behavior may change greatly between 18 (the minimum age) and 60 (the maximum age).

Finally, this policy is hardly more secure than no policy at all. Why? Imagine that you are a gay man, and your father/mother/friend is in need of a transplant. Are you going to let this checkbox prevent you from even finding out if you can save their life? Probably not. If you really care about the person, you’ll lie. Or at least be tempted to.

And that’s the real problem. This policy only works if people are honest. But not everyone is – particularly for such an emotional issue. People can be dishonest for a variety of reasons, with good or bad intentions. People can also be unaware of their HIV status – particularly straight men and women, who are not subjected to the same level of HIV education/PSAs and may not get tested as frequently. Because of this, blood tests need to be run on donors for the sake of safety, which makes a question like this one rather uninformative.

Personally, I can’t find a problem with allowing people to register and then testing them if they are matched. People who know they have HIV or hepatitis are already prevented from registering. I don’t understand the problem with at least testing for matches for the rest.

If someone can justify this policy to me, I would really appreciate it. But the way I see it, HIV kills enough people. Let’s not let the fear of HIV put even more lives at risk.

(If you are a woman or a heterosexual man and you do not use intravenous drugs, you are eligible to register to donate bone marrow, and I encourage you to do so. People like Amit Gupta and others are depending on your generosity!) 

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